Your fistula after transplant: To keep or not to keep?

By Anna Bennett

I am quite attached to my curvy, lumpy up-arm fistula (it is not my fistula's fault that it is big, snakelike and has an aneurysm).  We have been through a lot over the past few years.  But now I am realizing that stenosis does not stop after your transplant.  While I was on dialysis, I had a standing 3 month appointment for a fistulagram and angioplasty.  My rather robust vascular system seems intent on shutting my fistula down.  This is considered access failure - even though my fistula has been on vacation since my transplant last November.  And my last echo cardiogram showed a thickening of the left ventricle - all signs pointing to tying off my fistula at the 1 year mark.

Which leads to my question: What should we do with our access after transplant?

My surgeon says after one year tie it off.  Well, that freaks me out a little - if it is tied off, it can't be untied if/when my graft fails.  I certainly don't want to have to have a second fistula placed if that were the case.  Bill has had his fistula for almost 20 years (knock wood) there is no reason why mine can't last  - if I am proactive in getting it checked out and serviced as needed.

I hit the web for some research, and this is some of what I found:

Arteriovenous fistula after renal transplantation: utility, futility or threat? Nephrology Dialysis Transplantation 2006 21(2):254-257; doi:10.1093/ndt/gfi276

AV fistula closure reduces left ventricular volume and mass in renal transplant patients. Whether fistula closure will reduce the associated high cardiac morbidity and mortality is unknown. There are clearly insufficient data yet to promote systematic closure of AV fistulas in kidney transplant patients with stable renal function, unless symptoms are present. The balance might favour closure in selected asymptomatic patients, with a large AV fistula, a dilated left ventricle,a low probability of graft loss and a high risk of cardiac events. Randomized large-scale prospective studies are clearly needed and, potentially, will better define the protective role of fistula closure.

Effect of closure of the arteriovenous fistula on left ventricular dimensions in renal transplant patients Nephrol Dial Transplant (2001) 16: 368-372

Closure of the arteriovenous fistula in stable renal transplant patients results in a decrease in LVMi, due to a reduction in LVEDD. The change in LVMi is significantly related to the LVMi and LVEDD before fistula closing. In patients with a well-functioning allograft and persistent LV dilatation, closure of the AV fistula might be considered.

Arteriovenous fistula closure after renal transplantation: a prospective study with 24-hour ambulatory blood pressure monitoring.  Transplantation. 2008 Feb 15;85(3):482-5.

Because the increase in diastolic blood pressure after arteriovenous fistula closure occurred regardless of the preoperative level of diastolic pressure, we suggest that blood pressure should be monitored after fistula closure, particularly when preoperative diastolic blood pressure is borderline or elevated.

Cardiac impact of the arteriovenous fistula after kidney transplantation: a case-controlled, match-paired study (Transplant International, Volume 21, Number 10, October 2008 , pp. 948-954(7))

In kidney transplant (KT) recipients, cardiac impact of the persistence of an asymptomatic arteriovenous fistula (AVF) for hemodialysis has not been fully elucidated.

My final decision will be based upon the advice of my Surgeon. Dr. Benvenisty has been right beside me for my journey from pre dialysis through transplant, and he'll still be there if my graft should fail.  Access issues should always be at the forefront of thought for anyone living with CKD5 - without access, the disease wins.

Comments

[Jenny Patterson]

I understand your attachment - My graft clotted a bit over three months after I had my transplant. I remember calling the transplant clinic - "my fistula clotted" "Yeah. Are you sick?" No. But MY fistula clotted" "Are you running a fever?" NO. MY FISTULA clotted!"" Is it tender by the site?" NO. MY F-I-S-T-U-L-A CLOT-TED" "Yeah, didn't they tell you to expect that?" Well, yes. but sooner."
Anyway, you get the point...I missed that thrill for quite a while, along with other dialysis habits that came up over the next couple of years.
Thank you for sharing your research, I will be interested in finding out what you ultimately decide for yourself.

[Alison Hymes]

My fistula failed soon after my transplant. I can still feel the pulse there though. I was told this was common, that healthy blood is harder on the fistula than pre-transplant blood. It worries me because if my transplant fails that will mean a catheter first and than going to my right arm with no room left on my left arm. But no one else seemed at all concerned about it.

[Zach]

And all transplants last for at least 20 years. Right.

[Anna Bennett]

My take is that even though I have a functioning kidney, I still have CKD5, and maintaining an existing access is an insurance policy against graft failure. Now, if I take into account cardiac issues, that may weigh my choice in the direction of tying it off. I'm still looking at the data.

Zach if I get 20 years out of my boy kidney, I'd be over the moon.

Alison & Jenny, I'm seeing quite a few people commenting on the net that their access suddenly failed just after their transplant. That makes me wonder even more. What is the correlation? There has to be some empirical data out there. I don't understand the healthy blood theory, simply because I had my fistula with no problems for 18 months before I ever used it. I was dragged kicking and screaming into starting dialysis- I felt that it interfered with my vacation plans. My nephrologist reminded me that being dead is no vacation.

[Jenny Patterson]

Anna, I was told by UCLA that due to, not just *healthy* blood, but actual icrease in volume and lack of Heparin, that clotting occured in GRAFTS quite quickliy. They had anticipated mine clotting soon after surgery.

[ben]

This patient has a very high blood pressure during dialysis and after dialysis, with lot of medication for the blood pressure, it seems that this patient's blood pressure is high, on average the BP is 220/99 after the dialysis, during the day BP is about 195/95

This patient is having permcath after using dialysis for many years. My question is tieing the Fistula will it reduce the high blood pressure?

[Michelle]

10 months after my kidney/pancreas transplant my fistula suddenly STOPPED... no pulse, no thrill, no nothing. It scared me! I was not informed that the fistula might/will fail. In fact, my doctors spoke about having the fistula there in case the transplant failed.

Anyway, when my fistula "died" and I called the ER inquiring about what I should do no one seemed to take the matter urgently. The doctors literally stated that if it didn't hurt there was no need for concern.

I am now looking for any information relating to fistula failure after transplant and what my options are... is it viable for use later if my transplant fails? Should I have it removed/tied off? I have an appointment to see my doctor in January, but until then I will continue to track down some kinda information to help me understand what exactly happened to my fistula and what can be done to save it.

[Vickie Brown]

I had a kidney transplant 8yrs. ago...during dialysis my fistula never clotted and still hasn't after this long...it's really big and on my lower arm and around my wrist..hence it shows...I've always had lots of quesions about...kinda gotten used to them..but after reading post on here wondering if I should consider removing it....any opions?????

[Vickie Brown]

Sorry...opinions?..I had a another doctor that I was seeing with my daughter that noticeded it and asked me when I was going to do something about it...I said..I don't know..why?...He said well if you should ever cut it you would bleed to death very fast...wow!...the bump by my wrist is really large and noticable...hardly ever wear sleeves too short...

[Bill Peckham]

@Vickie Anna is off globe trotting right now ... my opinion is that you'd miss it if you need it. No doubt cutting the fistula would be disastrous, one of a few situations where a tight tourniquet would be a good option, but I don't think that accidently cutting yourself is a likely enough risk to push you into surgery. After all surgery carries its own risks.

[John Agar]

Bill ... we published on this back in the Australian literature (which, sadly, few read) in 1996.

53. Agar JWM, Jackson TJ, Steinwedel J, Corke C F, Appelbe AF: Arteriovenous access fistulae diminish cardiac reserve, anaerobic threshold and work capacity a case for fistula closure in stable renal transplant recipients. Nephrology (Carlton). 2(6), 387-392, Nov 1996.

[Anna Bennett]

@Bill, we DO do have internet in London! ; )
I agree with you, I'll just add a paragraph or so...

I did have my fistula removed in June 2010, simply because the anyurism was dramatically beyond repair (words like dangerous were used...). My feelings were that if my fisula were not threatening to blow out, I would have kept it (even considering the cardiac issues - simply because my heart is healthy, and dialysis access was my insurance policy). Sadly, I am now without access, and when my transplant fails, I will be back at square one. I wrote about the removal (excision - it was not possible to tie off my fistula). Here is a link to the excision post: http://ihatedialysis.com/forum/index.php?topic=18735.msg321326#msg321326

Now back to globe trotting..

[Bill Peckham]

Thanks John. Here's the summary from the abstract:
Summary: A patent arteriovenous fistula (AVF) in stable renal transplant recipients may be viewed as ‘insurance’ against late graft failure and a return to haemodialysis. A patent AVF may, however, exert significant chronic demands on cardiac output (CO) which may in turn adversely affect the prognosis of patients already at risk of cardiac disease. Doppler echocardiography and anaerobic threshold (AT) assessment were used to measure the CO and the work capacity of nine stable renal transplant recipients > 15 months post transplantation who had patent AVF. Cardiac output fell from 6.9 ± 1.48L/min with the AVF open to 6.0 ± 0.97L/min with the AVF closed (P < 0.002). the AT rose from 14.1 ± 5.67 with the AVF open to 16.5 ± 6.72 with the AVF closed (P < 0.002). the work capacity to reach the AT improved from 68.7 ± 30.8 watts with the AVF open to 84.6 ± 38.0 watts with the AVF closed (P < 0.004). This study suggests that a significant and chronic increase in left ventricular work-load accompanies a patent AVF resulting in a markedly reduced exercise efficiency. A patent AVF is ideal where graft survival is doubtful but, where long-term graft function is expected, the adverse effects of AVF patency, a chronic elevation in CO and reduced exercise capacity make a strong case for considering AVF closure. the prognostic advantage for left ventricular function may outweigh AVF preservation in stable renal transplant recipients.

[Bill Peckham]

Anna I don't think you were ever at square one ;-)

[John Agar]

Thanks Bill ... nice to see Nephrology quoted here .. it's a rather good (though largely US-unknown) journal ... it is the official journal of the Asia-Pacific Soc Nephrol and of the ANZSN.

I am not sure that closure (of an AVF) is wise for all ... but we did show a significant cardiac performance impact from a patent post-transplant AVF and it's a reasonable coin toss when the expectation past 18 mtgs is a longterm transplant.

We have involved the microsurgical team (who do limb salvages) and they have successfully been vessel reconstructing rather than vessel sacrificing ... why tie off and lose the option if you can reconstruct in such a way that if, down the track and an AVF is again required, the same vessels could be reconfigured into a fistula. Ok .. Have we actually re-made an AVF from a reconstructed set of vessels? ... No. Maybe it's that we have chosen those to reconstruct well ... For none of their grafts have yet failed ... But ... Why not think laterally and reconstructively, not just AVF destructively.

Food for thought

[Vickie Brown]

I agree with.."If it ain't broke don't fix it!" but are the chances of an anyurism higher or lower with or without it?..my fistula is so large and bulging and very active..all the way up my arm...I'm not concerned about IF my kidney ever failed not being able to use it (fistula) again..I'm not sure I would go through the process again...I'm 61 yrs. old..probably too old for another transplant anyway...what is the difference between having in tied off or removed?..

[Anna Bennett]

Vicki, you should always speak with your vascular surgeon about it and your transplant team. It was easy for me, my Transplant surgeon placed my fistula and then removed it when it needed to be taken out (I love one stop shopping!).

The difference between a tie off and an excision are just that. My fistula was excised, he opened my arm and removed the majority of the fistula here is a picture from the surgery but I have to warn you, IT IS VERY GRAPHIC http://picasaweb.google.com/lh/photo/98o_TCDwdlTooOVWrPWK68C6GUx6uYDhGzv4GlIRYjg?feat=directlink.

The excision had to be done because the aneurysm was very thin and the fistula was very large. He removed it because there would be less of a chance of thrombosis (which can be very painful post surgery). In a tie off, I have been told that it is a simple procedure where they "Tie Off" the fistula.

Dr. Agar makes a great point of questioning why we need to permanently "tie it off" I wonder if we will ever be in a place where we can have the best of both worlds, a low flow fistula while we are transplanted and then a high flow fistula if our transplants fail. It is a good question to ask the surgical community.

Talk to your doctors. Having your heart checked is a good thing as well. (you can see that there have been studies that correlate left ventricular thickening when a/v fistulas are in place).

I was 42 when I had my transplant,and 44 when I had my fistula removed. It is a highly personal decision, and I wanted to keep my fistula until I was finally told that there was no way that my fistula would outlive my transplant. That was the final decision for me. It was just a matter of time for the aneurysm to blow and the right thing was done by removing it.

[John Agar]

Just to make my comments clear:

We certainly do leave most AVF untouched and 'buzzing' after transplantation but there ARE those that are huge, unsightly and with very high recirculating blood flow rates which super-add to cardiac output and add additional strain to LV output ... as demonstrated by studies we reported 12-15 years ago in 'Nephrology' that showed lower anaerobic thresholds and reduced exercise capacity when the fistula was 'open' compared to the same tests done when the AVF was occluded temporarily by soft-tourniquet compression. This led us to set some potential criteria where fistula 'ablation' might be considered post-transplantation ... provided (emphasis on provided) the expectation was for long-term good transplant function. By this, we meant that graft function was normal with no rejectio and no CNI-toxicity or transplant glomerulopathy on serial protocol biopsies and that the patient was at least 18-24 months out from tranplantation with a fistula which was causing concern (for the reasons stated above).

We are blessed by having one of the leading microsurgical units in the world at our transplanting hospital (http://www.bobim.org) and we have collaborated with them in successfully trialing vessel reconstruction rather than vessel sacrifice in a small number of patients (4-5 patients, from my recall, over past years) ... ie: the microsurgeons have reconstructed the vein, disconnecting it from the artery and connecting it back into the venous drainage system to preserve ongoing venous (not arterial) flow - as a vein with venous flows and not as a continuing arterialised vein as would be the case in a continuingly patent AVF.

At least in theory, this should allow the vein to be later reattached to the adjacent artery to re-form the AVF should a fistula be needed later on.

We have done several of these. However, what we have NOT done (nor know) is whether truly this reconstructed set of vessels COULD be re-formed into an AVF again ... simply because none of the few patients in whom we have restored vessel integrity have yet had graft failure leading to a need to attempt fistula refashioning. We have tested patency of the reconstructed vein post-operatively and confirmed patency with apparently normal low flow venous flows restored - but that's as far as we have gone.

[Vickie Brown]

Anna, I saw your surgery pictures. thanks for sharing..I would imagine mine would look something like that...my fistula is huge..looks like a crooked snake up my arm..but regardless of the cosmetic questions...the real concern is the risks of leaving it in..after 8-1/2 years of transplant with NO episodes of rejection..alway great lab results..would it be wise to have it removed..I will talk to Drs. in Houston about it..but they have always left it to me...I've learned more on here about different decisions..I don't want another surgery..I've had 5 hernias surgeries since transplant..have you had any problems in that area?..they were supposed to take it out with last hernia surgery but was in surgery for 8 hrs..they said they didn't have the time left to remove it!..wow..still wondering!..any suggestions are greatly appreciated.. I had Polycystic Kidney disease...they removed both kidneys 2yrs. before transplant..I understand your kidney disease is different..did you have one kidney transplanted?...removal of both of mine cured my disease but I still have cysts on my liver..which doesn't effect the liver like the fuction of the kidneys..probably more info than you wanted to know...got a little carried away...thanks....

[Anna Bennett]

Hi Vickie, we are both in the same boat. I have PKD too. I chose to keep my native kidneys. (they're huge, but they are mine, all mine!) My liver has cysts as well - PKD is an insidious disease.

I now have three kidneys: My two very large non working native kidneys and my functioning transplant.

For me, the most concerning part was the correlation between LVH (Left Ventricular Hypertrophy)and the existence of a fistula. I had been having regular echocardiograms, so I knew what shape my heart was in. That is why I wanted to risk keeping my fistula.

BUT the aneurysm was the deciding factor. So it was removed. My suggestion would be to make sure that your heart is in the best possible shape and then decide (making sure that the fistula is not affecting it).

The surgery and recovery for my excision was relatively straight forward. Day surgery, I went home with a friend that night and by the next day, I just needed to be careful with my arm as it healed (there is a whole series of healing pictures over on IHD).

You can always e-mail me for more details.(my contact info is listed under bio/contact link just under Bill's picture on the top right)

[Anna Bennett]

There is more on LVH over at Home Dialysis Central: http://www.homedialysis.org/resources/tom/200704/

[Alison]

My father is getting ready to start dialysis in March, and just had surgery last week to have a fistula inserted. He is in A LOT of pain still and can not get out of bed or barely walk. He is 73 years old, but does anyone know if this is normal? How long is the recovery? Has anyone every had this surgery? I don't know which sites to turn to for advise. Any help would be greatly appreciated!